A tribute to the boy with the sparkling blue eyes.

A tribute to the boy with the sparkling blue eyes.
Posted on Fri 2 Sep 2022

You might recognise the smiling boy in the photo? His name is Ethan and he was born on Easter Sunday, 2004.

This year Ethan would have turned 18, but sadly, like 50% of children born with severe CP, he passed away before he could celebrate his 18th Birthday.  Ethan was only 6 years old when he passed.

His mother, Shannon remembers her beautiful, bubbly little boy:

“I used to tell Ethan every day, ‘I am the luckiest mummy in the whole world, because out of all the boys, I got the best one.’ He was a lot of work, but I would do 100 times more work to have him back.”

When Ethan was born, very little was known about the causes of CP and the best ways to prevent and treat it. After losing her beloved son, Shannon was determined that she would help other families find the answers they were looking for:

“When Ethan was diagnosed with CP I, like so many parents, wanted answers and, even though I have now lost my beautiful boy, I still want those answers for people with cerebral palsy and their families. Cerebral Palsy Research is the way.”

Today, thanks to the tireless efforts of advocates like Shannon, and the extraordinary support of members of our Big Family, we are making exciting and life-changing progress. World-leading research, supported by Cerebral Palsy Alliance's extraordinary donors, has helped reduce the rate of  cerebral palsy from 1 in 400 babies to 1 in 700 babies.

Together, we’ve also lowered the age at which children are diagnosed with CP from over 24 months to 12 weeks – giving more children access to life-changing support sooner.

Any one of our research projects could have a significant and lasting impact on thousands of families, which is why your ongoing support is so critical. Without you, many of our most promising research projects would never get off the ground.

And, despite significant advances in recent years, CP remains a life-long, incurable condition and the most common physical disability in childhood. There is still more work for us to do.

Shannon is clear about the difference your support of research makes to families like hers:

“Losing Ethan has been the single most devastating thing to happen in our lives. If a medical breakthrough could be found for this condition, I would be ecstatic.”

Click here to find out more about the exciting research breakthroughs your support makes possible.

Disability activist and author Hannah Diviney talks about celebrating the community wide commitment to STEPtember, her excitment for the upcoming World CP Day and the endless possibilities of assistive technology in her column this month. 

Cerebral Palsy Alliance-backed disability tech startups PolySpine and ResusRight have both been awarded prizes at the 2022 Good Design Awards, Australia’s most prestigious showcase of innovative and creative design